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Comment by April on April 14, 2014 at 12:19pm

Hi ladies!  Debs, the laser is xtrac laser.  From what I understand it is pure UVB light and the wavelength is 308nm.  I get it done at my derm's office and my insurance covers it.  However, there are places that will do it without a script from your doc and you have to pay out of pocket. It is somewhat pricey I think.  Mostly this is used for psoriasis, but my doctor says it also clears lichen planus, so I think what he is doing with me is mainly an experiment to see if it will work for FFA.  I will say that the results have been very good, but it took a while to see them.  I have been getting the treatments for 7-8 months.  I don't want to give anyone false hopes as I don't think this has completely arrested the hair loss.  However it slowed down a lot, almost not noticeable unless I compare to where I was a year ago.  Ugh, I don't know, I was doing so well for several months not thinking about this really at all.  I've been stressed recently because we just bought a house, and moved, and I'm applying for jobs and going on interviews.  Anyhow, been feeling like my hairloss is getting me down, and I keep looking at my eyebrows and eyelashes thinking they look thin, then the next minute I think they look ok.  I still have hope, I definitely do, but also trying to come to terms with the fact that this may never go away completely.  Anyone have any tips and how to not be so stressed out about this??  Also, any good ideas for covering up hair loss.  My hair is very big, curly, frizzy and wild.  I don't know how a hairpiece would ever blend in with that!  Thanks for listening: )  So grateful for you all

Comment by Annie on April 10, 2014 at 11:50am

Hi all, just catching up on the latest posts.  April, I'm excited to hear that your laser treatments are working.  I think we would all love to try a drug-free approach to treating ffa.

I just returned from my 3-month check up with my derm.  I have been taking Plaquenil for 9 months now, as well as using a 5% Betamethasone topical.  The doctor was fairly pleased.  He was hoping that the ffa would no longer be active at this point, but there are a couple small stubborn areas that are still active.  I see him again in six months unless I experience a flareup.

I have just noticed in the last month or so that I'm not shedding quite as much.   The pain has gradually lessened since I started the Plaquenil/topical regimin, but it's still quite painful whenever the wind blows hard.  The doctor said that it can take years for this kind of pain to go away, and sometimes it doesn't.  The good news is that it doesn't mean that my treatment isn't working.  

Comment by Debs on April 10, 2014 at 2:31am

April, can you please advise where you get your xtrac laser treatments ? and what is the cost ? Lasers are not offered on the NHS in the UK but there are laser helmets we can buy fir about £660 but this may not be the sane wavelength that your derm uses. Glad you are having less inflammation

Comment by Brenda, IL US on April 9, 2014 at 8:50pm

Hi Ladies, I saw my derm last week and my FFA is very active.  The inflammation extends almost to the crown of my head.  She did several injections and recommended i get them every four weeks.  I think i'm going to stop using rogaine and continue with clobetasol, doxy, and plaquenil.  Getting eyebrows tattooed on April 29.  Excited!

Comment by Jean on April 9, 2014 at 4:39pm

Hi everyone

A really interesting discussion - I've thought for ages that an over-active immune system is somehow at the route of FFA.  I have a damaged bile duct which leaks bile into my gut (liver, kidneys etc) and this stimulates the need for my immune system to work overtime.  I'm hoping to see a specialist at Kings College Hospital very soon with a view to repairing my bile duct.  I'll obviously report back if my improved gut leads to a calming down of my immune system and ultimately remission in FFA. psoriasis and arthritis.

Watch this space!!

Comment by Celia on April 9, 2014 at 3:35pm

April -there are several ladies who have suffered with FFA for many years.  My understanding is that - whilst FFA may appear to 'burn out' - the condition is liable to start up again depending upon several factors.

This is great news for you about your treatment ! Are you still having hair loss generally - away from the scarred area ?

Someone posted several weeks ago that her derm had declared that her FFA had stopped, but I can't recall who that was ! Sorry !

Regarding the 2 year timescale your derm said he had read about, I guess he will have also said that the hairloss pre-burntout can measure many centimetres.

April, if your treatment is working and your hair loss is diminishing - DON'T get stressed out about the reduction in treatments.  Go with it.

The very fact that your derm has to refer to the findings of some literature underlines the reality that that this condition is really little understood and actually rarely encountered by the majority of dermatologists.

Keep us posted !

Comment by April on April 9, 2014 at 2:27pm

Hi everyone! It's been a while since I've posted: ) I just saw my derm today, he does believe that the xtrac laser treatments are working, since the condition of my scalp has greatly improved and my hair loss has been little to none.It's even regrow name little in some areas. I just looked at a picture of myself from a year ago and my scarred area is only slightly worse. So I guess it's safe to assume this treatment is working. Although now he is dropping me down to treatments only twice a month which is stressing me out somewhat, but he thinks I may not need so many treatments at this point. Praying my hair loss doesn't start up again. Anyhow , wanted to pass this on in case it helps anyone. Also, I have a question for anyone out there. My derm said the literature shows that FFA burns out after 2 years in most cases. Has anyones FFA burnt out??

Comment by Celia on April 5, 2014 at 6:17am

Good morning ladies.  I have posted on Anne's discussion re the use of anti-biotics.  I know there are many of you who read but don't post very often, but if you have a story to add on Anne's page then it could be useful.  Thanks !

Comment by MJ on March 31, 2014 at 6:08pm

A few weeks ago I posted a question on the CARF website stating that I would be unable to attend the annual conference, but was interested in knowing if there was any discussion of possible medical and environmental surveys for FFA. I never got a response. I too reaaly believe that in doing so, some commonalities might surface.

Comment by Celia on March 31, 2014 at 3:52pm

Hi Debs - I have thought for a while that the trigger for FFA is not the same for everybody otherwise it would have been very easy to spot.  The same is the case for other auto-immune diseases - rheumatoid arthritis isn't triggered by a specific set of circumstances for example.   Do you recall when we were reading that it was felt that this disease was generally seen in  post-menopausal women............not the case.   However I also think that the idea of identifying a common factor might be a possibility.  I agree that a couple of 'questionnaires/surveys' have been blunt  instruments  to be able to pinpoint anything worthwhile in terms of finding the cause. I am still off all meds apart from clobetasol. It's 5 weeks now since I saw a new derm - no results from blood tests that were to take a week - the thought was that there may be a reason for this that could be found from blood tests.....tried calling, cannot get through........

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